posted
A little background first: I've been unwell now for six+ years. Over the course of trying to find a doctor who would take my complaints seriously, I finally located one 250 miles away. My inclination was thyroid problems, which she considered, but based on my lengthy symptom list she asked me if I'd ever been tested for Lyme. She ordered a blood test for Lyme (along with dozens of others) but when the results came back she told me the lab performed the wrong one. In the interim, it was discovered I DID have thyroid problems so that lab error got put on the backburner. The thyroid issues have since been corrected, but most of my symptoms are back, which is leading me back to the doctor's Lyme suspicions once again, since Lyme was never ruled out.
Now for my question: I had the ELISA test, which came back negative (not zero but low--I think something like 0.24). I understand that a Western blot through Igenex is the preferred test, but my question is, would that detect the disease in someone who has had it for six years or more? I do not want to be hardcore treated without some assurance that I actually have Lyme, but I have been bitten by ticks a few times in the past 10 years. Hence, it's a possibiity. In fact, horrible as this sounds, I'm almost hoping that it IS Lyme so I will finally have an explanation for a severe deterioration in life quality that multiple doctors have scoffed at.
Thanks in advance!
Posts: 90 | From Pennsylvania | Registered: Oct 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The Western Blot through Igenex will detect the lyme no matter how long you have had it. Time is not the issue.
So, you definitely need that test. I went undiagnosed 10 years. Then, I treated for 2 before I got the Western Blot through Igenex. It still showed positive bands.
Just know that the Western Blot is not looking for the lyme bacteria. It is an indirect test. It is looking for antibodies to the lyme bacteria.
So, some people's bodies are fooled by the lyme and they don't make antibodies. They have lyme, but they get a negative Western Blot because their immune system has been fooled by the lyme. (The lyme hides inside the person's own cells and so goes unnoticed by the immune system.) Other people with lyme get a negative Western Blot because their antibodies are trapped within complexes made up of many things, large biofilms as they are called. So, the antibodies cannot be detected in the Western Blot. They are not free to "float" to the test strip and show up.
All that to say that no lyme test is fool-proof. If you get a negative, you can still have lyme. That's why lyme doctors know to go by symptoms and to just CONSIDER the results of lyme tests. They will give you a course of lyme meds to see how you react. That will tell the tale.
So, get your Igenex Western Blot and get yourself to a good lyme doctor who will treat you no matter what the test shows based on your history and your symptoms.
We have all had multiple doctors scoff at us, deride us, treat us like mental cases, humiliate us, etc. All because they could not conceive of an illness that would cause all of the multitude of symptoms we experience.
Our lyme doctors, however, are different.
If I knew where you were in Pa, I might be able to give you names of some good lyme doctors in Maryland.
Let me leave you with a quote from Dr. Burrascano, lyme disease pioneer. Here it is:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. . .
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
So, notice that "a very important factor" in making the diagnosis is the patient's response to treatment--a trial course of antibiotics used to treat lyme disease. I suggest you read and STUDY this document to get your education on this disease.
Wish you the very best. Let us know if we can help you further. And, welcome to LymeNet.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I thought above .20 is a positive result. I could be wrong. Did you get a copy of your ELISA results? That sounds like a positive test to me. Did you get it done at Lab. corp.?
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
posted
Also, through LabCorp is the CD-57 test. It has been VERY accurate for me and both of my children and may be worth to run this test also. Some people say that it's not as accurate for them. Dr. Burrascano considers it a break-through and many LLMD's are doing this test.
Hope you find your answer.
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
| IP: Logged |
posted
[QUOTE]Originally posted by Kat1777: [QB] A little background first: I've been unwell now for six+ years. Over the course of trying to find a doctor who would take my complaints seriously, I finally located one 250 miles away.
My inclination was thyroid problems, which she considered, but based on my lengthy symptom list she asked me if I'd ever been tested for Lyme.
She ordered a blood test for Lyme (along with dozens of others) but when the results came back she told me the lab performed the wrong one.
In the interim, it was discovered I DID have thyroid problems so that lab error got put on the backburner. The thyroid issues have since been corrected,
but most of my symptoms are back, which is leading me back to the doctor's Lyme suspicions once again, since Lyme was never ruled out.
Now for my question: I had the ELISA test, which came back negative (not zero but low--I think something like 0.24).
I understand that a Western blot through Igenex is the preferred test, but my question is, would that detect the disease in someone who has had it for six years or more?
I do not want to be hardcore treated without some assurance that I actually have Lyme, but I have been bitten by ticks a few times in the past 10 years. Hence, it's a possibiity.
In fact, horrible as this sounds, I'm almost hoping that it IS Lyme so I will finally have an explanation for a severe deterioration in life quality that multiple doctors have scoffed at.
Breaking this up for easier reading for many here with visual challenges -
The ELISA test is useless - it misses half the time.
Answer to your question is yes, Lyme can be picked up in tests after a long time. In my case, 25 years undiagnosed, and I came back with several positive antibody bands, through IGeneX IgM and IgG Western blot antibody tests.
For anyone who qualifies as low income, you can get 75% off IGeneX testing by applying at www.lymetap.com.
That's why many Lyme doctors end up treating clinically, by history and symptoms.
For those who have the money ($600), there is a perfect Lyme test finally, through www.advanced-labs.com in PA - it cultures the actual bacteria.
Lyme affects the thyroid. It affects everything, basically.
Are you aware that the 2012 Boston Lyme Disease conference is being live streamed this weekend? Another day to go tomorrow - go to www.ILADS.org to watch it and learn a bit.
You can also use the Search function at the top of the page to type in any word or phrase and archived threads will come up that you can read through. It takes a bit of study to catch on to what's been happening with this bacteria in our bods.
I suggest you check in with folks here about making sure that you see a Lyme-literate doctor. You can make a post in Seeking A Doctor if you wish, and people will respond.
Take care - Robin
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic